Hello, I have been diagnosed with extensive endo affecting areas including ureters which according to my surgeon have been damaged by endo and may need stents fitting. She also said my bowel was affected but would need another op to do this.

My next course of action is to see her in 8 weeks and be given Zoladex for three months then do another op.

I don't have anyone to talk to about this until that point. I feel very worried and plunged into a diagnosis that I now little about.

I am utterly exhausted after last op And am not looking forwards to a more extensive one! Please let me know if you have similar experiences or advice for me?

4 Replies

Hi Edsmom, and I am so sorry you are having such a rough and scary time

I know this is probably of little comfort, but what you've said all sounds like standard procedure for endo. Your surgeon probably needs to consult with bowel and bladder surgeons to determine the best course of action purely because she's not a specialist in those areas, not because there's necessarily going to be any great 'drama' involved. She just needs to have the best people for the job on standby, which wouldn't have been the case for a diagnostic laparoscopy.

The Zoladex again is standard before surgery, it just calms things down a bit and makes it easier to see everything when they go back in there.

It sounds as if I am down-playing the situation, I'm not, because it will be a bigger op and any op is a scary thought, particularly when you are just recovering from surgery.

It must be very scary not to suspect endo or know anything about it and suddenly be told it is extensive.

I just wanted to tell you that everything will be fine, as scary as it is. It is completely natural to feel exhausted, emotional etc etc after surgery so dont worry about that.

Once endo is in the bowel or bladder, they usually do like to do a separate surgery. In fact it is quite promising that your doctor has taken this view as it sounds like she is taking it seriously and trying to give you the best treatment.

I am in a similar situation when it comes to the bowel. I already know I have endo having had two previously laperoscopies. I always had bowel problems with the endo but it got worse and had a colonoscopy showing that the endo is (they think!) running the entire length of my bowel - the problem is this was done by a bowel specialist not an endo specialist so it is hard for the bowel specialist to know it is endo but it all seems that way. I have been referred to an endo specialist a 4 hour drive from my home but anyway he has said I will also need two surgeries, like you. The first surgery he will try to remove all endo in the Pelvis and the second surgery will be to sort out the bowel.

There are a lot of options when it comes to bowel endo and it will depend on how deep and infultrating your bowel the endo is. Sometimes they can remove it by just cutting or lazering it off the bowel - its a time consuming process as they obviously have to be very careful with what they are doing which is usually why the do separate operations. Additionally, the affected area of bowel can be removed - this is a bowel resection - sounds scary but it is quite a common operation. In the worst case scenario they may have to remove the bowel and fit a colostomy bag but this is rare so please dont stress.

Fitting stents to the bladder is quite a simple proceedure as far as I understand it.

Hope this helps and I am happy to talk to you if you have any questions. I get the first stage of my surgery next week - eeeek

Hi thanks for responding, I hope you go on ok with your surgery. It's so nice to hear we are not alone in this diagnosis. I have had symptoms for years but it has taken 10 mths with a consultant for them to finally give me the diagnostic lap. I'm sure you'll be fine. Take care!